Dismantling the Gender and Sex Binary to Enhance Medical Care: A Conversation with Dr. Frances Grimstad

Interview by Jessie Liu

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HHPR Editor Jessie Liu interviewed Frances Grimstad (she/her), MD, MS, who is a Pediatric and Adolescent Gynecologist at Boston Children’s Hospital.

She engages in clinical and research work surrounding transgender and intersex reproductive health. She has been involved in trans health advocacy since her own adolescence, when she decided to pursue medicine to address disparities in care faced by these communities. Her interests center around optimizing reproductive health outcomes for both populations including hormonal and menstrual management, sexual health, surgical care, and family planning. Dr. Grimstad believes in using research and advocacy to dismantle clinical bias and bring more evidence-based care to gender- and sex-diverse patients.

At Boston Children’s she is the founder of the Transgender Reproductive Health Service and the gynecologist in the Center for Gender Surgery and the Be-U clinic (a program for patients with intersex traits, or differences in sexual development). She believes reproductive health and the decisions that surround it are deeply personal and unique to each individual. She prioritizes individualized reproductive, sexual, and fertility goals for her transgender, gender diverse, and intersex patients.

JL: So, before we begin, I was really interested to find out that you were part of the Harvard SOGIE (Sexual Orientation and Gender Identity and Expression) Health Equity Research Collaborative. Could you tell me a little bit about what kind of work you do there and why you joined this initiative?

SOGIE was initiated by a couple of researchers and clinicians across Harvard who felt that there was a lot of great work going on across the affiliated medical institutions, but that some of would have been further enhanced had people reached across the aisle and known about each other’s work.

The work that I do predominantly centers on trans and intersex reproductive health, which is very much a niche world within everything that we do in sexual and gender minority spaces, and I find that when you're in a niche, one of the most important things to do is make sure that you have great research collaborators with complimentary expertise. Harvard SOGIE is a great way for me to have that, as my SOGIE collaborators enhance my work and I am able to collaborate on theirs. Harvard SOGIE is really wonderful and it feels a little bit like a research commune: the whole goal is that people are just able to uplift one another.

JL: More generally, what sparked your interest in trans health advocacy?

I was born and raised in San Francisco, and I came out as a queer person in middle school. As someone who spent much of my adolescence involved in advocacy, most of my core friend circle through that period became predominately queer and trans folks who were also interested in advocacy.

Around high school, I started to realize that my trans-identified peers had far greater disparities and barriers to overcome than I did as a queer person. And so, while I was working in this broader LGBTQ advocacy space as a high school student, I realized that where I could leverage my work and my focus was as an accomplice to the trans advocacy movement.

JL: I noticed that you've written extensively on the experiences of transgender and gender nonbinary patients during imaging encounters and in creating an inclusive interventional radiology department. Why do you think this specialty is of particular interest?

I think that actually lends itself well to talking about how important it is to have collaborators who have experience that’s different from yours: when I was in residency, I was introduced to a lovely person and radiology resident, Justin Stowell, by one of my co-residents. He had realized that there wasn't a lot about trans health in the radiology world. Around the same time, I'd been helping to grow a trans clinic and had been realizing that while I could protect and really uplift my patients in my own clinical space, none of that mattered if I had to send them to radiology or to phlebotomy or to all of these other places in the hospital but not feel like I could ensure that they got quality care there. Since we teamed up together a number of years ago, Justin and I have been able to build this very niche research collaborative, where what do we really focuses on the intersections between clinical trans care and radiology.

JL: Can you tell me a little bit about how existing attitudes and structures within medical education and the health professional/provider community have contributed to transgender and intersex health disparities? How has your own experience as an attending at Boston Children's Hospital shaped your views on these issues?

I think there are many examples, but I’ll mention two. One is that despite the fact that we know sex isn’t binary, nor is it a singular entity (including karyotypic variations, hormonal variations, genital variations) that we still work hard to base most medicine off of a sex binary, often viewing intersex traits or difference in sexual development as deviations from the sex binary. We then work hard to try and “fit” or align them to a sex binary (which could be through surgery, hormones, or simply gender of rearing). This doesn’t help the field of medicine to remember that sex is more than just a single “M” or “F” or someone’s genitals, gonads, and hormones—sometimes these don’t align in the way we expect, and that’s okay! But by working as a medical field to fit everyone into an “M” or “F” we “other” so many of our patients who don’t fit into the sex binary. And ultimately, that means we are providing poorer care.

The second thing, thinking about it more through the trans health lens, is that early trans health models offered a very structured process that everyone who was trans was expected to go through—where it's like, oh yes, someone identifies as trans, they socially transition and then they acquire hormones and then they get surgeries and then somehow, there's a certificate at the end? But we now know this isn’t how everyone’s gender journey goes. Some people will desire hormones, others may want hormones and surgery or just surgery for gender affirmation, and still others will not utilize either hormones or surgery. And no one person’s gender identity or affirmation is less valid than another. But our health infrastructure has been set up expecting this ordered three-step process. So now we are doing the work of expanding gender care models to better support people through individual journeys and not just the prescribed 1) coming out, 2) hormones, and 3) surgery stepwise process that isn’t everyone’s goal.

This approach has also meant that people specialize in gender care, or specifically mental health, hormones, or surgeries, and they mostly exist in major centers. This isn’t the best long-term outcome for our patients. Trans folks should be able to get medical care anywhere! Medical homes and the niche, expertise care they offer are very much necessary, but we also need to make sure that in creating medical homes and centers of excellence that we are not isolating our patients to only those areas. For example, I want family medicine doctors in rural Kansas or rural Oklahoma to think of someone who's on gender-affirming hormones as a kind of patient they haven’t seen before, but in the same way that maybe they haven't cared for someone with type 1 diabetes before. They know it's technically a part of the spectrum of medicine, and so while they don't have the expertise, they're going to learn. And regardless of your medical therapies or surgeries you perform, any clinician can always create a welcoming and gender inclusive space, including ensuring chosen name and pronouns are used for all patients, not just your trans patients.

My goal is to move us from that initial framework where we think of trans and intersex patients as just a tacked-on population on top of the existing care we provide, towards the concept of creating a health care system where they are integrated throughout healthcare in the way that many patient populations already are: for example, someone might say, “I’m an OB/GYN and as such I see all patients for concerns of pregnancy, regardless of gender or sex assigned at birth.”

JL: In pursuing this kind of goal, how can we leverage non-binary concepts of gender and sex to enhance medical care? You’ve mentioned this idea of "anatomic inventories," what do you mean by that?

One of the first things to do is to really start off by recognizing that we don't have a binary society, and so our idea of putting things into neat bins of “women” and “men,” in some ways, gets us more into trouble than it gets us out of trouble. The original goal of that was to recognize that not all people are the same, so we can't just say there's one human population with monolithic health care needs and outcomes. Instead, we started by separating health care and research approaches into women and men, then race, and then age, and so on and so forth with finer and finer categories. And we also now know that just saying “men” and “women” is still not enough to understand how healthcare experiences may be different, or how we might be able to stratify risk.

Now, let's actually take a step back and ask, why did we stratify as men or women to begin with? Well, we did that because we know that some people have hormones that are estrogen versus testosterone, and some people have ovaries while others have testes; those are things that we categorize. But what if, instead of me delivering a baby and noting that there’s a vagina, and assuming thereafter that there are ovaries that produce estrogen and that there's a uterus, I take this more in a stepwise fashion? I know I delivered a baby with a vagina. That's all I know at that point in time, and as the baby gets older, if they menstruate, then now I know the baby also has a uterus and estrogen and ovaries.

This anatomic inventory helps us to understand that not all people who were born as men or women, or who identify as men or women, have the same bodies. When we assume a certain anatomy and physiology based on a sex assigned at birth, it may not always be accurate. And as medical people, our goal is to not work off of assumptions—our goal is to actually use concrete information which we have. So what I love about the anatomic inventory is that it takes the gender and the sex out of it, and it says, “What anatomy do you actually have?” And then it also allows me to differentiate between what a patient used to have, what they have now, and what they want.

For example, if I have someone who's 50 years old and they're coming to me for a surgery, and I see on their screen that they have an F (female) symbol, I’m likely going to order a urine pregnancy test because I’ve assumed that an F means they have a uterus means they have ovaries means that they have a chance of pregnancy. But what if I instead used an anatomic inventory and saw that this person used to have a uterus, but they had a hysterectomy 10 years ago? Then there would be no point in ordering a urine pregnancy test.

For the same reason, if I had a patient who was born without a uterus and had a vagina, to have that person go through many medical encounters where every single time they're asked to take a urine pregnancy test despite the fact that they might have significant anxiety around not being able to carry a pregnancy, could be very traumatic for them. These incorrect assumptions then lead to bad patient care.

Anatomic inventories move away from that binary. That translates into things like research: let’s take one of the largest breast cancer surveys out there, where their inclusion criteria was identification as female, and they tracked your risk of cancer. If you've got hundreds of thousands of people participating in a research study and you know that trans people make up 0.6% of the population, you’ve got to assume that at some point, some of those people probably weren't assigned female at birth, and some might be intersex! So how does that change our interpretation of the data if we know they don’t all have the same genetics, or hormonal exposure? By moving, again, towards the idea that we are looking at what people had and what people have now and getting away from the idea of sex and gender, we can actually move towards studies that better reflect true population risk.

JL: Over the past four years, the Trump administration has unfortunately done significant damage to the rights of transgender and gender-diverse people, including reversing Obama-era protections that prohibit discrimination in health care based on gender identity. However, the Biden administration has brought in important figures such as Dr. Rachel Levine, nominee for Assistant Secretary of Health and who would become first openly transgender federal official to be confirmed by the US Senate, who notably brings a commitment to gender-affirming care. What does this shift represent to you, and what do you hope to see emphasized in policymaking?

Right now, we are getting to see more and more trans people in leadership spaces and not on the margins. I think what Dr. Rachel Levine represents, and what I hope many, many more trans people to come will represent, particularly trans people of color, is that trans people do not need to be saved by cis folks. Trans people are only disempowered because we did that as cis folks, and then we created a savior model where we think we have to save them. But I actually think what's most valuable is that we are able to start seeing trans leaders who are who are able to lead this space, rather than us cis folks. Gender identity does not make you any less competent, any less able to live your full self and to be an amazing leader in society—trans leadership is not a deficit to our society, nor is the women’s health equity movement a monolith, and ignoring the power of diversity would do a disservice towards any progress we make.

As for what I want to see on the agenda for gender-affirming care, I think the needle is being moved forward, which I really like, though what we're seeing is a lot of reactionary work at state levels, which is expected whenever you try to push things forward. I think it's going to be really imperative that we as clinicians continue to show how common and how appropriate it is that we are providing gender-affirming care. We’re not going to have all the answers about what the optimal gender-affirming care model is, but that doesn't mean we don't offer care to the best of our abilities in the interim.

JL: Is there anything else you would like to add that you think needs to be particularly spotlighted in a conversation around trans, intersex, and gender nonbinary/diverse healthcare?

The issue that we really need to move forward with is that we have been fighting for gender diversity, and gender diversity is fairly well understood in the medical field compared to decades ago. But we have based the idea of supporting gender diversity off of a sex binary, and that is not helpful to trans folks and it's certainly not helpful to intersex folks.

One of my common taglines for when I talk about trans care with other people is, “Great! I'm so excited you're on board with gender not being binary—now we need to talk about how sex isn’t either.”

When we recognize that, we can then fold gender care into our whole range of practice—as a gynecologist, I have a number of patient populations that I need to be competent to care for. Providing gender-affirming hormones will be one of my responsibilities. And when someone comes to me for a gender-affirming hysterectomy, I won’t shirk away because I will know that that hysterectomy is done just as much as a hysterectomy done for pelvic pain or for any other reason, and that they are the exact same procedure.

Gender-affirming care should no longer be a tacked-on area of science, something that you can do as an elective if you so choose. This is a core part of what we do as clinicians: we see all patients, and that includes cis men, cis women, trans folks, intersex folks, and it's just a given.

That, to me, is the most powerful thing that we can remind ourselves of as physicians. Sure, we can have expertise in certain conditions and diseases and approaches to care, but that doesn't mean that we are denying access to healthcare to a whole part of the patient population.

And so, to anyone who says, well, I’m just not going to see trans patients, I would say, well, then I think you need to rethink whether medicine is the place for you.